From a young age, Sharon Halperin knew that something was wrong with her. Significant and strange physiological changes, severe hormonal disorders, which manifested themselves in darkening and roughness of the skin folds, severe and resistant diabetes, and very high triglyceride levels.
Despite her professional experience in research and medicine, and her extensive connections, no doctor was able to put all the pieces together. Over the years, she underwent dozens of tests, received misdiagnoses - diabetes, Cushing's syndrome, polycystic ovaries - but none of them explained the full picture, until she found one doctor who knew the disease and knew how to diagnose it, and that's how she learned the name lipodystrophy.
Lipodystrophy is a serious and extremely rare disease - according to estimates, the overall incidence of lipodystrophy is estimated at approximately 2.79 cases per million people. Without appropriate treatment, it can lead to many complications. It is characterized by partial or complete loss of adipose tissue, which significantly affects many processes in the body of patients.
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The disorder in the accumulation of subcutaneous fat greatly affects their body structure and sometimes causes it to accumulate in vital organs, which can lead to serious health complications and even death. Due to the low awareness of the disease, many patients are forced to go through a long and frustrating journey of misdiagnoses, which leads to a significant delay in receiving appropriate treatment.
Now that she has been diagnosed and has begun researching the disease, Sharon has decided to take on the mission of shining a spotlight on the disease and helping other patients cope with the challenges of diagnosis, treatment, and policy advocacy. To that end, she founded the "Lipodystrophy United Israel" association, which is now launching with the aim of raising awareness of lipodystrophy - a rare disease that affects the distribution of the subcutaneous fat layer in the body. "Lipodystrophy United Israel" will work to make information accessible to the public and the healthcare system, to promote medical research, and to create a supportive community for patients and their families.
""I went through years of medical uncertainty until I was diagnosed, over twenty years of running between doctors and moments when I was willing to accept the most difficult diagnoses possible, just to get an answer to the uncertainty. That's why I know how necessary it is to raise awareness of the disease and its symptoms," says Sharon Halperin, the founder of the association. "Our goal is that no patient will feel alone on this journey and that we can dramatically shorten diagnosis times.
""The establishment of the Lipodystrophy United Israel Association is good news for patients and the Israeli healthcare system," also notes Prof. Yael Leventhal, who coordinates treatment for the disease at the Tel Aviv Medical Center.
"Lipodystrophy, like other rare diseases, requires close collaboration between patients and medical staff to deepen knowledge, improve treatment, and ensure the best response. The new association will be a significant driving force in making information accessible, promoting research, and providing medical and social support to patients and their families. I believe that the association will also become a supportive community, which will change reality for many.".
